Stretched

I think the biggest problem for me with multiple disciplines (visual art, writing, ballet) is switching gears from one to another. After wrapping up the ballet season and feeling a sense of relief that I don’t have to plan classes or choreograph dances, I feel exuberantly unburdened. I feel like I have all the time in the world, and of course there are so many things to catch up on, now that I have all this “free time.” At the same time, I have a tiny sticky note wafting around, reminding me of writing deadlines, and some decent-sized sketchbooks looming in darkened corners. Those sketchbooks are definitely up to something. There is a predatory quality to their lurking that makes me wary.
And there are so, so many word documents and files of word documents on my laptop, just begging to be released into the world…And these disciplines–I used to call then passions–of mine perch precariously on the summit of a veritable mountain of tasks and responsibilities I carry as a mother, a wife, and a person who needs a certain amount of self-care.

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A quick “action sketch” from college art–a few too many muscle groups, I think

For years I’ve given myself motivational lectures about “narrowing my focus” to be more efficient. In a way, I feel my life has done it for me. The chronically ill can accomplish only so many tasks in a day, however much they may enjoy those pursuits. But the longing is still there.
I’ve never quite believed the Superwoman myth: that I could Do it All. “What is all this ‘it’ I might want to do?” I wondered… I do, however, have a tendency to embrace too much, to stretch myself too much trying to include just one more…And as my illness has taught me, when you stretch that much, sometimes things just don’t work efficiently. Sometimes there’s something to be said for being static. Grounded. Stable. And yet I am who I am.

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My Life as a Rough Sketch

IMG_20170313_204024.jpgI have so many rough sketches I never finished–many I never intended to. My my life–that I always intended to do more with. I was thinking about this as I quickly sketched a rough self-portrait. My skills an an artist aren’t what they once were. But then, I reflected, much about me isn’t what it used to be.

The sketch, lacking in detail, nevertheless shows more than I would have thought. The not-quite-at-ease posture, the slightly lifted arms (as if to carefully hold the mug and keep it from spilling) are very accurate. I move differently than I once did, with more care and less ease. The hands are awkward, and grip too tightly, as mine do, to maintain their grip. I couldn’t quite get the foot right:my dancer’s feet that just won’t do what they’re supposed to anymore. They have the muscle memory, they try, but they are going the way many of my other joints have…

Yet here I am. Seated, contemplative, even if just for a moment. Looking into the distance as do most of the female figures I [used to] draw and paint.

But rough around the edges, just like my life: So many things I haven’t finished, and priorities have had to change. So much isn’t what I would have envisioned. So much is still vague.

Yet here I am.

Reflections on Sadness

Before dawn I was woken by a very sad little girl.
Lately I’ve noticed a strange melancholy in both my children that I remember in myself around the same age. I’m not sure if children pick up on sadness from living in a house with chronic illness, or from the depression of the parents (more likely), but it deepens my own sadness that this seems to be a legacy I have passed on. My daughter in particular asks questions such as, “are you and Papa going to die the way your mom and dad did?”
My husband says, “no, of course not. We will always be with you.”
I, unwilling to trust the backhandedness of life, say, “I hope not,” but try to reassure her she will always be taken care of.
And, I think grimly, no wonder she’s sad. I wonder if I should be so forthright and realistic with her, precocious as she is at age five. I wonder which is kinder: the promise we can’t keep, or the certain reality that one day we will die, though metaphysically, of course we will always be with her. We made her precious tiny human self, and so are ever and always connected: inexorably part of each other. Can she be secure in our intangible love when she craves the security of our physical presence?
This morning she huddled next to me in bed, crying that she would miss her brother when he grows up. Her mean older brother, who teases her, picks on her, calls her names, and is subversively jealous of her, in spite of our best efforts to teach and encourage him otherwise. She will miss him, and dreads being parted from him.
Such is the nature of sweet spirits.
I know so many young women who carry a heavy burden of sadness. And so many of them, too, are sweet spirits, undeserving of so much sorrow.
After being disappointed with my efforts to comfort my daughter, I carried a trace of sorrowful miasma with me through the rest of the day. Going on social media deepened it until I could wear it like a coat.
Finally, my ponderings outweighed my personal reserve, and I wrote a post about it. Almost immediately, there was a reaction, with surprised and almost irritated me. Then I realized it was one of the young women I know, one who has more than her own share of sorrow to carry. She was sharing in ours. I was deeply touched by the simple expression of an emoji reaction–though as a rule, I am dismissive, almost scornful of trying to relate through emoji expressions. This was different.
It brought my thoughts back to my recent blog on kindness. It made me think how valuable those small gestures are, especially when we are suffering with our own burdens, fighting our own demons of depression, poverty, frustration…how much we can give each other.
My daughter and I got through our day, and it would have been hard to tell she began it in tears. Both children played–reasonably nicely–together, and went to bed peacefully and happily–after I read them three or four bedtime stories, and completed our evening ritual of evening prayers, kisses, hugs, tucking in, and one last “good night” prayer.
And as the small gesture I received meant so much to me, I try to bring a little more mindfulness to my parenting, of all those little things that mean so much to children. Especially since I won’t be here forever.

It used to worry when when my children expressed sadness, but as I considered it more, I realized several things:

My husband and I both come from melancholy families. It seems a certain amount of pensive melancholia is inescapable.

But more significant is the role of sadness in the human experience. too little acknowledgement of sadness in our lives could be denial. too much, a sign of depression.

But in general, sorrow is merely part of the human experience, rolling over us in waves or cycles much like any other human emotion, coming to go again, to come again, and so on.

I think what is more telling about us is how we use that experience to relate to others. Knowing sadness ourselves, do we hunker down around it, feeling sorry for ourselves, or do we use that point of reference to reach out to others, extending empathy to them in any small way we can?

Thank you, my friend.

 

Memories

goofy-santa-bron-15For years, my childhood stuck with me, clearly–or more so–than many more recent events. I used to play my favorite memories in my head, over and over, as if afraid of losing them.
After the loss of my parents in early adulthood, my theory began to prove unreliable. At first it was my short-term memory, then, as time went on, my mid-to-long term memories. Neurological anomalies have been dismissed as inconclusive, and in general my “brain fog” is attributed to medication or depression. I wonder…
My children’s childhood begins to blur as we progress from day to day, and I startle with grief at times, how much they have grown. How fast. I mourn the moments I’ve lost. Their little quips, their expressions, their milestones. All I have is a general sense of them, everything else is lost in the day to day routine.
Feeling this gnaw at me, I tried extra hard to build better memories for them this Christmas: stories, decorations, lights…and was rewarded on occasion with, “this is the best Christmas ever!” and sometimes nettled by, “Christmas isn’t coming because I didn’t get [a certain present]”
My mind has been wandering backwards lately, trying to find moments in childhood to help me relate. I am appalled how many of my carefully preserved memories are now shrouded in fog, lost to the general sense of things. But I do remember a Christmas or two.
The funny thing is, we didn’t celebrate Christmas. Or Easter. Or Birthdays. The reasons, through my eyes of this moment, are as complex as they are sad. But Christmas and its trappings were exiled from our house. For decoration, we had no more than the deep snow of the northern winter piling up outside our windows, the frost on the panes, the sharp stars glinting overhead. My grandmother, and sometimes one of my aunts, would always send a box of treats. Sometimes they sent presents. It seemed that family had the power to veto our religion’s prohibitions. The boxes of nuts in their shells were no less delightful for that, nor were the mandarin oranges in a crate, each wrapped in a tissue-thin green paper that made them seem somehow extraordinary.
Then there were chocolates. THAT was extraordinary. I remember the game of guessing what was in each one by its shape and the vague pictures on the inside of the box. I remember a doll one year. A snow globe another year, which was barely allowed to stay because of the garish figurine of Santa Claus it held. That snow globe is a story in itself.
So my early memories of Christmas, though tinged with slight regret at the lack of carols, lights, trees, and annual celebrations, still have the scintillating moments of oranges and of nuts being cracked out of their shells by the warmth of the wood stove. Discovering almonds and hazelnuts and walnuts. Hearing the satisfying CRACK of each one being released from the shell, and learning the trick of cracking without crushing.
And perhaps enjoyed something by association: The Nutcracker story or the ballet. I remember that many times: a highlight of the winter season.
My sisters remember my fervent desire to be a ballerina, of which I still have not even a vague recollection, but I do recall being caught up in the magic of the ballet. It was one of the few wonders of the magical that entered my childhood.
When I grew up, I lamented the dearth of fairies in my early years, the diminished wonder that I dimly recall searching for with longing. When I had my own children, I determined to give them that sense of wonder that I missed.
I fall so short with my children. I suppose it’s typical of motherhood that reality falls short of expectation. I wanted to raise them in a home filled with enchantment, feeding them tales to stir their imagination and ignite their little spirits with wonder. I planned to do so much art for them, write so many stories, make so many toys…
I try. But part of me is pragmatic enough to see the cost of too much fanstasy. And yet…those imaginings can so enchant the memories, it sees a shame to let them pass by.
This year, they received gifts from house elves and snow fairies. We watched the Nutcracker, the Grinch, and read those and so many other old tales. We have the Snow Queen, we have folk tales, we have an illuminated Nativity and a fairy village, and as much Light as we can manage. And oranges…
And I hope it’s enough.

Long-lost Art

Finally, after years of deprivation, I’ve managed to scavenge some drawing chalk from a long-forgotten stash. These were actually my “substandard” materials at one point. I used to use them for sidewalk drawings. I never thought they were good enough for my “real” work. Ah, how things have changed!
I know, “deprivation” sounds like hyperbole to someone who doesn’t get what art is: a deep, gnawing hunger in the soul. Not to be sacrilegious, but my need for art isn’t that much different than my need for my faith. Though my faith affects many more areas of my life than it once did, so I suppose in that way it has taken a step ahead of my art.
It’s also like my need for my other driving passion: ballet, even though my dancing ability has long been lost and since crumbled away on the dusty road of my past. And for years I’ve denied myself painting, drawing, even sketching, because there was no room, no time, no money for materials. Once every few years it would get to be too much, I’d scrape together a few dollars for some low-grade acrylics or drawing pencils, and knock out a few hasty paintings or fill the last few pages in an old sketchbook. Nothing I was ever really happy with. I even had a mediocre showing or two when my daughter was a baby. I can’t imagine sustaining that sleep-deprivation now, not after prolonged illness. But back then, it was easier to keep going than to stop and rest and have to get up again. So I would plow through, settle for less than my best, and defray the cost…until now.
Now, I’ve managed not more than a few scribbles in the past year. I thought the passion was dead, and maybe it still is, but the hunger is still there. Starvation. It’s worse than living without love. And, the more miserable my physical health makes me, the more I crave anything that nurtures my spirit and keeps me a little further from despair. My faith community is now a long, slow, hazardous, winter drive away, and with love and companionship, even friendship in scarce supply due to schedules and priorities, what’s left? After I’ve given all I have and more to motherhood every day, what’s left to replenish me?
Another pursuit I’ve been trying to resurrect is recreational reading: so far I can only focus on well-written fantasy. Everything else becomes a soon-forgotten blur. In the latter of two well written fantasy books I’ve managed, I found a few lines incisive:

“Beauty is no end in itself, but if it makes our lives less miserable so that we might be more kind–well, then, let’s have beauty, painted on our porcelain, hanging on our walls, ringing through our stories. We are a sorry tribe of beasts. We need all the help we can get.” (Confessions of an Ugly Stepsister by Gregory Maguire. Regan Books, an imprint of Harper Collins, copyright 1999. p 367)–forgive me if my citation skills aren’t what they used to be–rusty.

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I finally worked the chalk over a large sheet of newsprint (I always hated working on brittle newsprint! but it’s cheap & disposable, lessening the artist’s reluctance and attachment), remembering what my art teachers used to say about getting the process going. That method consists of circles, mostly: large, shaded circled. I used to be so frustrated by them, but now they were all I had the confidence to start with.
The result was electrifying. Intoxicating. I felt like I’d finally been let out of a small, dark space I didn’t know I was in. What I sketched was crap–a few shading exercises and a quick–very rough–sketch of a woman’s head, soon to be joined by some contributions from my children. But it was something. A drink to a withered soul, a few crumbs to the starving. A passion I can maybe rekindle if it’s not too dead. And if my hands and shoulders will take the repetitive motion.
Even one rough sketch now and then might keep my spirit from drying up and blowing away. And my trees: my lonely, dead trees that almost no one likes or understands. I miss my trees.

Kasha (Buckwheat Groats) Cooked in Bone Broth

I’ve recently discovered a bizarre love of Buckwheat, a love completely unique in my family, it would seem. Other than sneaking ground kasha into my kids’ breakfast oatmeal, there’s no way to coax it past their grimacing little mouths.

Yet I love its nutty flavor, unusual texture, and high nutrient value (easily googled). It’s filling, satisfying, and almost as good as a fruit or vegetable, especially if it’s sprouted. Here’s a list of ways to use buckwheat, easiest first. 🙂

  • Simple Kasha: Roasted or raw buckwheat groats can be purchased through health food and bulk food stores. 1 cup of groats to 2 cups of water or broth makes about 3 cups of the finished dish: something between a pilaf and a porridge. Season with salt and pepper and add butter or coconut oil if desired.
  • Sprouted Kasha: Raw buckwheat grouts sprout quicker than most seeds I’ve tried: 1/4″ sprouts growing in as little as 2 days. To start, the groats need to be soaked overnight, then drained, rinsed thoroughly, and drained again. A 1/2 gallon sprouting jar with a stainless steel mesh lid works great! They need to be rinsed and re-drained 3-4 times a day, and it helps to turn the jar occasionally to encourage drainage.
  • Once sprouted, the groats need to be dried at a low temperature to preserve the enzymes created by germination. The best drying method I’ve found is spreading the sprouted buckwheat on cookie sheet lined with parchment paper, and placing in a conventional oven set to 200°. When dry to the touch, they’re done.
  • Cream of Buckwheat: Scornfully referred to as “Baby Cereal” by my 7-year-old, this simple porridge is actually quite tasty (and I theorize, if the little buggers were started on it young enough, they’d never know the difference). I’m happy to say my 5-year-old is more accepting.
    Lightly chop sprouted dried buckwheat in a blender or food processor. Using 1/4 cup chopped buckwheat to 1/2 cup water, boil water in a small saucepan. Add chopped buckwheat and turn off heat. Stir constantly until the cereal thickens and water is absorbed. Sweeten with maple syrup or honey and enjoy.
  • Bone Broth Kasha: My favorite, because of the health benefits of bone broth, this dish is prepared just like the Simple Kasha recipe above. For added flavor, saute chopped onions in grapeseed or coconut oil, add minced garlic, and, when fragrant, add bone broth and bring to boil. Skim off any foam that rises, add sprouted buckwheat, reduce heat to low. When thick and soft, toss with a fork, adding butter or coconut oil, and herbs and spices if desired.
  • A more traditional recipe calls for toasting the kasha in the bottom of a heavy pan or skillet, and includes a beaten egg scrambled into the buckwheat and cooked. In a separate pan, broth is brought to a boil, butter and seasonings added, and the buckwheat-egg mixture is added to this. It’s then cooked on low heat, covered, for up to 30 minutes.

Questions? Feedback? Suggestions for user-friendliness? Please post a comment below. 🙂

Gluten-Free Spiced Carrot Loaf

042Although baking is not one of my favorite activities, I’ve gotten reasonably good at it out of necessity. And fortunately, my mom’s recipes convert well to gluten-free. I will admit that there’s a sense of nostalgia in making things I remember from childhood, tasting them again, making them for my children, and continuing a family tradition of sorts. It brings back especially good memories in this season of family time and traditions.
I’ve tried two versions, one simply gluten-free, the other without eggs, sugar, and nuts. It’s a great low-sugar treat any time of the year, and a great way to use up the carrot pulp from a juicer…if you do that kind of thing…. : ‘
I’ve found that pumpkin pie spice works well in place of the other spices, if needed. Enjoy!

Gluten-Free Carrot Loaf

Beat together 1/2 cup oil, 2 eggs, 1 cup unrefined sugar or 1/2 cup honey

stir in 1 cup grated carrots or carrot pulp from juicer

mix together in separate bowl:
1 3/4 cup gluten-free baking mix
2 tsp baking powder (I use homemade or aluminum & corn-free)
1/2 tsp soda
1 tsp cinnamon
1/4 tsp cloves
1/4 tsp ginger
1/2 cup chopped nuts (optional)

Pour mixed dry ingredients into carrot mixture–stir only to moisten.
Pour into 9x5x3 bread pan and bake 40 min or until toothpick comes out clean. let sit 10 min before removing to rack.
Store in plastic bag
Even more Allergy-friendly Version:

In glass or metal mixing boil, combine 2 Tbsp ground flax seed with 1/4 cup hot water and let sit for a few minutes.

Beat together 1 cup apple sauce, 1/2 tsp stevia or 1/4-1/2 cup honey. Add to flax meal mixture and mix

Mix together in separate bowl:
1 3/4 cup gluten-free baking mix
2 tsp baking powder (I use homemade or aluminum & corn-free)
1/2 tsp soda
1 tsp cinnamon
1/4 tsp cloves
1/4 tsp ginger
1/2 cup chopped nuts (optional)

1/2 cup organic raisins

Pour mixed dry ingredients into carrot mixture–stir only to moisten.
Pour into 9x5x3 bread pan and bake 1 hour or until toothpick comes out clean. Will be much heavier and more gooey than with eggs.

Let sit 10 min before removing to rack.
Store in plastic bag

Burned Again

Thoughts on July 20th–A Look Back

I swore a bit after burning my hand on the toaster oven. No microwave for the children & me-especially since the cancer diagnosis. I am back on the quest for the whole-food, nutrient dense diet. But I do swear more than I used to.

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“Hope” Mixed Media, By Marlane Quade Cook

The burn didn’t bother me after the initial shock of pain, but I did remind myself they always hurt worse later. Marching alongside this thought was the nagging accompaniment that I’ve been such a wimp lately, going back on my pain meds for knee strains and slight “twinges” in my abdomen–post-surgical souvenirs I make too much of. To my surprise, the burn barely registered on my pain scale, even though it began to ooze and a small piece of skin had come loose. When I accidentally stuck it in hot water I was reminded of its presence, yet it was nothing compared to the constant throb of my ribs, back, pelvis, the yanking tug-snap in my knee, and anything else that has been recently stressed. Maybe I’m not such a wimp after all, I reflected, dabbing aloe vera onto my seared skin. Maybe my doctors just don’t have a clue what I mean when I say I’m in pain.
It hasn’t been much more than a month since I was in the E.R., screaming in agony as I tried to manage my post-op pain. That was my ten. Anything less is usually accompanied by a shrug and a ballpark, “oh, five or six…” Only a few days ago stabbing pains in my side kept me in bed all weekend and then sent my to one of my OB-GYN’s on-duty colleagues, who belittled and dismissed me to such an extent that I was too stunned to argue the matter or stand up for my rights as a patient when he foisted procedures on me I would normally have refused, especially from a male practitioner. Live and learn. Chalk up another bad experience, add it to the life experience, and return to the internal certainty that “this is just me” and “I am weird.”
In fact, for someone with Ehlers-Danlos Syndrome as well as Fibromialgia and God Knows What Else, this kind of seemingly random pain is not uncommon. After my first child, I was to experience painful pelvic subluxations for over a month. After each birth I hemorrhaged. And took a year to recover.

I simply don’t heal right. Nearly every cut or burn leaves a scar, Nearly every bump leaves a bruise. I need phenomenal amounts of protein–animal protein, ideally–to function without experiencing weakness and lightheadedness, and to forestall injury. I was attempting a vegetarian, low-fat diet when I experienced my first catastrophic injury: a torn ACL that has been my achilles heel for 16 years of my life. When I finally lost the use of my knee last fall and had to have the ACL replaced, it baffled my orthopedic surgeon that I simply could not get back on my leg. I could not strengthen it to the point of weightbearing, even though I started Physical Therapy (PT) a week after the surgery and did daily exercises at home. At times, my other joints would flare up and I would be unable to assist my weak leg enough even to leave the house, so there were many times I had to miss PT, and more than once I had to use a wheelchair because of joint instability in my knees and hips. The therapists could not all understand my good day/bad day ratio, and pushed too hard during flare-ups. The result: a worsening of flare-ups. This cycle continued until I began to call in sick on my bad days and work myself at home within my limitations. My dancer’s mind rebelled at these cowardices, but they were effective in combination with regular PT (and the addition of advanced rehab), and I slowly regained my strength. A mere eight months later I was able to begin walking unassisted, though recurring bad days always felt like a setback.

The hardest thing about living with Ehlers-Danlos Type III could be the persistent “weakness” in the joints and the difficulty in building and maintaining muscle, and therefore, overall fitness. It could be the loss of my passion: classical ballet. I am now to the point that even sitting and instructing a class for an hour or two is so far beyond me. Even leaving the house on a bad day is beyond me, unless it’s an absolute emergency. Yet I don’t think those are the worst. The worst would have to be when I see my six-year-old son is simply too worn out to play, when I see his or his sisters’ knees extending beyond their normal range of motion as mine did for so many years. It’s seeing bruises on my four-year-old daughter’s baby skin because she bumped her knee or fell or because another child was playing too roughly with her. It’s seeing the sensitivity of my children’s skin, the scars they already have, my daughter’s love of dance that may be as unfulfilled as my own, my son’s extreme reactions to pain. Genetically there is only a 50% chance that my children have inherited the gene for EDS, but the signs are discouraging. They are too young for evaluation, which prolongs the uncertainty and worry for me as a parent. Nearly as bad is the fatigue and joint instability that keeps me from being there for them as I would like to. Gone are our excursions to the park or going for walks, play days with friends are limited to those families who understand our situation, which are few.

Though I have not lost hope, the past year has been discouraging in the extreme. It has changed the way I view myself and my abilities. As someone who valued few things more than strength and health, I have finally admitted to myself that I am not physically strong, and may never be. And yet, to put it in words feels self-indulgent. Whiny.

I can usually deal with the pain. As my individual pain scale may indicate, I’m used to it. I don’t know if I can deal with the increasing need for surgeries, and now I have the unrelated diagnosis of cancer to add to the mix. Yet I am one of the most stubborn people I know, and I am reasonably sure that in spite of the temptation to give up I will almost certainly persevere to the end. Because I have a family. I have children. And my children need to see me live with as much dignity and courage as I can manage.

Afterthoughts

Lately when I write, I think I’ve said everything I have to say…Then all I have to do is hit “publish,” “send,” or simply start doing something away from my computer, and inspiration strikes again, or I realize I forgot a vital point, or that I quite simply flubbed a cover letter.
As a less-than-mobile person for the last five months, this can get a bit exhausting, especially if it’s something I want to write before I forget.
I’m supposed to be working at putting full weight on my weak leg with every step, but when I’m in a hurry, I resort to the tested and reliable method of the crutch swing: click, swing, click swing, holding up the leg that hold me back.

I feel a little like a three-legged dog sometimes: a bit bedraggled, a bit slow, not sure I’m really wanted, overcompensating to do what needs to be done.

But as long as I can do what needs to be done. Then again, rehabilitating this leg also needs to be done.

But there are so many afterthoughts..

Thoughts on Writing

Blogging is a lucrative undertaking for many people, but it is also a field that is somewhat…swamped!
(It saddens me that while I know what “lucre” is, and am familiar with the named Lucretius and Lucretia, I seem to have forgotten how to spell “lucrative.”)
The blogging field is so vast with so many sites, blogs, Zines, Mags, and, you know, mag-a-zines, there is a flood of potential work, but also an Aegean Stable of work to find it (If you’re not familiar with the 12 tasks of Hercules, please look them up & be enriched by the allusion). 😉
I think the most grueling work I have done to date is not, as many writers say, sitting in front of the blinking cursor and blank page willing the words to come, it’s

A) my own perfectionism (nothing on my personal blog makes my grade, FYI)

B) The research, reading, and tampering trying to find the right “fit”

C) The submissions process

D) The waiting for a response, many of which simply do not come. Rejection implied.

What amazes me is that writers keep at it, even when it’s discouraging. I think we have to be very determined or a little obsessive, or maybe both.

The silver lining is that, there always seem to be more submission calls…